The Perils of Sharing Brain Scans

A fascinating paper by neuroscientists Van Horn and Gazzaniga chronicles their pioneering, but not entirely successful, attempt to get researchers sharing their brain scans: Why share data? Lessons learned from the fMRIDC.

It all started in 1999 when, along with some colleagues, they decided that the time was right for data sharing in neuroimaging. They got some public funding, and tried to get various major neuroscience journals to require that anyone publishing an fMRI study should make their data available to the fMRI Data Consortium (fMRIDC).

By making it mandatory, they'd ensure that there was no selection bias. Requirements to post raw data were already common in other fields of science like genetics and crystallography. So, they thought, why can't it happen here?

However, it didn't go down very well:

Upon becoming aware of our efforts and goals, fMRI researchers angered by journal requirements to provide copies of the fMRI data from their published articles began a letter writing campaign seeking to muster opposition an effort which was featured in the news and editorial sections of several influential journals.

Editorials and commentaries over fMRI data sharing were aired in the pages of Science, Nature Neuroscience etc. expressing concern over the data sharing requirement, over what possession of the data implied, human subject concerns, and, if databasing was to be conducted at all, how it should be conducted “properly”.

This was all before my time, sadly. It sounds like a grand old academic street-fight. No doubt those on the other side remember it differently from how it's presented here, though.

The reactions of our colleagues caught us somewhat off guard. We were honestly surprised by the negative and hostile response when we had believed that creation of a data archive would be of benefit to the neuroimaging community. Perhaps, they had a point.

Maybe the field wasn't ready for fMRI data sharing? Perhaps, it was too early to start such a project? We struggled with how best to move forward or whether to move forward at all.

Anyway, they decided they would continue, on a more modest scale. fMRIDC ended up with data from about 100 fMRI studies by the time the funders pulled the plug in 2006, only a fraction (and perhaps an unrepresentative one) of the papers published, but still, it's something.

As I said, I missed out on this debate, but if I had been in the field 10 years ago, I suspect I'd have been on the extreme wing of the pro-sharing faction, the Montagnard to the founders' Girondism. My view is that no researcher owns their data. The only person who owns the results of a brain scan is the person whose brain it is.

If I could wave a magic wand, I'd put a chip in every MRI scanner that automatically uploaded all scans to a public database as soon as they appeared (with the subject's consent, and/or with personal information about the subject stripped out). I'd fix all the software such that every time someone ran an analysis, it was publicly logged. Total transparency is best for science, I believe, and it would also make scientists lives easier, once they got over the initial shock.

Sadly that's not possible... yet... but data sharing is a noble cause and, as Van Horn and Gazzaniga point out, even if fMRIDC is dead, the idea lives on with many new initiatives emerging, hydra-like, in its place.